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Posted 3/17/2006 4:32 PM (GMT 0)

Hi all,

 

I have been lurking here for quite awhile. A little background on my family. Sister has Fibro/Lupus. Aunt was diagnosed with Fibro quite a few years ago, is now diagnose with RA/Lupus. Oldest brother has Appalachia.  I was diagnosed with Rheumatoid Arthritis last year. Had a bad flare the Month of February in 2005 and was off work for the whole month. Drugs not working (took me off the Prednisone), couldn’t get out of bed cause I hurt all over on both sides, not sleeping well, depressed cause I wasn’t dealing well with it. Put me back on the Prednisone and then slowly weaned me off.

 

Changed doctors because I felt that this one wasn’t doing enough for me. New doc took blood test, Rheumatoid factor at 95, under active Thyroid. He referred me to a Rheumatologist. Rumey put me back on Prednisone (also on Levothyroxine for Thyroid), started feeling better. Next visit (two weeks later) to him he came into the room pretty fast and said that my RA was progressing fast, RH factor shot up to 344 have to get me on something to slow it down. Put me on MTX (5/16/2005).

 

about three weeks ago had a very bad migraine, when I woke up the next morning my left lower back was hurting. Two days later I was over at a friends house and bent just a little and got a shooting pain in my lower back where I had to hold on to something till it went away. Driving home the pain started going down to my knee. I called my Rheumy and got in to see him, thinks it is a slipped disk. Had me stay home from work for two day’s and put me on Hydrocodone for the pain. Also time for my blood work for the MTX, called me the next week and was told to stop taking it and come in for more blood work in two weeks, going today. No other info.

 

Don’t know what to do, pain is really bad, in my buttocks, groin, front part of leg, down to my knee, left side leg swollen, and right side a little swollen. The hydocodone only last for about 2 hours. Left 2 hours early from work last night because of the pain. This morning pain really bad and can hardly walk on my leg. Hurts to just sit here and type this. I have a home spa that I put in my bathtub and it helps for a couple hours, use ice pack, heating pad, again only helps for about two hours and I also do stretches. When do you decide to go to the ER? And how do you deal with the pain? All of my family lives in other states. Thank god for my son, he helps me through the rough times.

 

I am sorry that this is so long. And thank you if you took the time to read this. 

Post Edited (Lamba) : 3/17/2006 9:35:19 AM (GMT-7)

Posted 3/18/2006 3:12 PM (GMT 0)
Lamba Hi and Welcome to HW,We are glade to have you but sorry you are having such a hard time.Thing's get alittle slow on the week-end's but other's will be along soon.

I'am sorry that you were diagnosed with RA,I know how you feel I as well have RA,OA,AS and sjerens,so I know where you are comeing from.I would like to ask what bllod work have you had done?Have yopu been tested to see if you carry thr HLA-B27 gene?Most people that have an autoimmune disease carry this gene and most likley either your mother are father are both carry this gene.

Now for the pain part if the Hydrocodone is not working then you need to tell your doctor that you need something else because what you are on is just not getting it.You may want to ask to be sent to a pain management group they are wounderful I see one my self and they can get you on something that will help keep your pain under controll.

I wish yu the best of luck and please continue to come back and I hope that you get to feeling better soon.
Posted 3/18/2006 3:36 PM (GMT 0)
Hi Lamba,

I'm sorry to hear what you are going through. Have the doctors done a full blood panel on you to make sure that nothing else is going on that is causing such a severe sudden onset of the RA?

As Curley said, you might want to see a pain management specialist, if possible. Depression goes hand in hand with chronic pain like this, and the fact that you are not accustomed to having pain like this will make it worse as you mentally have to adjust to the fact you are fighting and unseen opponent like this.

Depression can and will make everything much worse, no matter how much you can't fathom that fact.

Good luck. I hope you get some answers and relief soon. I've been there, where one day I'm fine and the next my whole world was turned upside down due to sudden life-long pain. It is not fun, and defintely do not go thru this alone....get help thru HW, doctors, friends, etc.

***

Posted 3/18/2006 5:31 PM (GMT 0)

Curley and CalMama,

Thank you for answering. Last night was not a good night, very depressed and crying, I really hate to admit that.

I went and had my blood taken, only took one vile from me, I don't know what he is looking for. I was suppose to get a card in the mail about the blood work, didn't get it. When the office called me I asked why more blood? She said she didn't have any other info for me, just that the doc wanted me to come to have more blood work done. When I had my appointment with the Dr. he did say that if the pain didn't go away he would do an MRI on me.

I couldn't tell you what kind of blood work has been done, my first appointment with the Rhuemy, he did about 3 viles. I really like him, when I call, he usually sees me in about a week. Can I ask for copy's of all of the blood work that has been done?

My old supervisor at work didn't believe that something was wrong with me, we had a blow out at work (I had asked for help). That is why I was off the month of February in 2005. Depressed, a full blown RA flare. Thank god the head of HR has a sister in a similar situation, she was the one that suggested I take time off to get the meds and body straightened out. I don't talk to anyone about it at work, they just don't understand. Besides, I don't like to complain, I just do the work no matter how much I hurt. I work nights and I am off Friday, Saterday and Sunday. I call Friday's my sleep day, I don't do anything but sleep.

It's nice to find a place to talk about this, I hiope that everyone is having a pain free day

Posted 3/18/2006 7:56 PM (GMT 0)

Yes, you can request a copy of your bloodwork and should get it no problem.

I understand your work situation. People who haven't dealt with pain, depression, etc...do NOT understand whatsoever.

Hang in there, it sounds like you have people working on the problem. Keep your voice being heard, and continue the fight to find out what is wrong and what you need to be pain free.

HW has been such a wonderful healing place for me, I hope you continue to stay and find as much help (and understadning friends!) as I have here!

Feel better!

**

Posted 3/19/2006 7:50 AM (GMT 0)
dear Lamba,

 

welcome to HW! so wow....you've quite the genetics eh?

RA is terrible, i can do without.

besides prednisone & MTX what else have you been on to slow down the RA?

when do i say it's ER time?  well, like an ER physician said to me: Although RA is a chronic disease...it still needs emergency attention at times. so, when you have uncontrollable joint pain, your pain meds are not helping it, or when there is acute pain anf swelling and about to cry...you GO. @ ER you will recieve fluids, some morhine or Toradol, and solumedrol. all which can help break a flare. 

 

i would defintely question about Enbrel or Humira. they go well with MTX.

yes...the pain meds you are on are short acting. i take a slow release morphine wich is great! plus dilaudid for breakthrough pain. there is no "high" or drowzy feeling like with Avinza (for me that is so far) like regular narcotics...so you can function on it. it beats taking opioids every 3 hours.

 

i would aslo inquire about ankylosing spondylitis which involves the lower back & kinda sounds like what you explain. it's common with RA. there are tests and MRIs are a good idea too.

 

the bloodwork you go for could just be to track your RF, sed rate, and ANA, and CRP and CMP. these are pretty routine for RA pt's and the CMP is good to have if you are on MTX & pred because it looks at your liver function and metabolites. yeah, always ask for a copy of your labs...YOU OWN THEM! IT IS YOUR RIGHT AS A PATIENT TO ACCESS THEM & HAVE THEM IN YOUR POSSESSION.

i went througha similar situation w/ work too. in school more. (nursing) when in nursing school i would get "what are you doing having any business doing a career in this field? it's laborous? why not get a desk job? you're too ill to nurse"...blah blah blah.  but i was actually GREAT at it, that is...when i could stand and walk!  but i WILL return i know it.  in a bad health state right now...but hopeful for the future. i get what you say about not talking about it when in work.  thank God for healingwell! it's where i let it all out!

how long have you had RA?

please write back when you're up to it.

sincerely,

erin  

Posted 3/19/2006 5:12 PM (GMT 0)

Erin,

Thanks for replying. There are 7 of us in my family, and none of the other brothers and sister has any kind of problem (yet). I guess that my mom's cousin's daughter had RA really bad. Both of my parents are deceased. I was diagnosed September 2005. My wrist were so swollen that he took a pic of them. I was having problems way before that, just didn't want to admit it.

The first doctor put me on muscle relaxers and the prednisone, and then weaned me off the prednisone. When I was off for that month he screwed me on Short Term Disability. Didn't send in paperwork, and he told the insurance that I was depressed. Then when I went back to work he told them to give me a desk job. There is no desk job there that I could do; I could have lost my job. That is why I found another Dr; my goal was to be referred to a Rheumy.

My Rheumy has only put me on MTX. I asked to be put back on Prednisone cause that was the only thing that seemed to work for me. I haven’t had any side effects really, except for the moon face. But I can live with that if it takes the pain away.

People can be so mean; there is one girl at work that has snide remarks every time I am at home sick. She will say stuff  like; she isn't sick, she is just sick of work. I am not a mean person but I would just like to be able to point my finger at her and say, you are going to wake up in the morning and not be able to get out of  bed because you can't move any part of your body because of the pain, All your fingers hurt, so you can’t dress yourself or hold anything.

Rheumy said that he will call me to see how it is going. When I see him next I will ask him about other meds.

I am so glad that I decided to post. I am feeling a little better; the med is taken the edge off where I can function. I am in Colorado and it is pretty cold, suppose to snow today and most of next week, probably why RA is acting up.

Lamba wishing everyone is having a pain free day.

 

Posted 3/20/2006 3:51 AM (GMT 0)
dear Lamba,

that was so sweet of you to wish all a pain free day...unfortunately all we can do at times is wish.

it takes some times quite a few Dr.s to finally get a "team" of them that support you & KNOW YOU and your case.  obviously, this doc that screwed you over with this desk job business doesn't seem to me to be on your side.  but...time will tell the truth to many doctors.  he/she might think lightly of your case now, but perhaps as he sees you more...he'll know that your disibility is worth looking at again.

 

disibility issues are so complicated. i can't shower or dress myself sometimes 5 out of 7 days a week...and just because i'm young, SSI thinks i'll get better real soon! well....i've been waitin 5 years!

 

scrutiny from others has to be brushed right off your shoulders. you don't need that nor deserve it. when that person is real sick and real scared some day...i bet she'll think back to you and how she acted towards you.

some people are just that way....but i think people like that should work in a canning factory away from civilization! (nothing against canning factories but i think we all catch my drift)LOL.

 

if you are having progressive RA joint pain & problems...maybe the MTX is not enough. i would really talk about a TNF med. prednisone yes, will help swelling and pain but will not help slow the RA or try to remiss it.

RA  can get seriously severe and disabling very quickly. and it sounds as if you are worried.

 

have you applied for disibility again?

are you unable to work totally?

my heart goes out to you for i know how bad this is....i know how it makes you feel when you lose so many things we were once able to do independently.

 

sincerely,

erin

Posted 3/20/2006 5:06 AM (GMT 0)

Erin,

That is why I found another doc who sent me to a Rheumy, The Rheumy is great, he cares. I can call him with a problem, and he usually gets back to me that day or the next day.

I am so sorry that it is taken you so long for disability. I have read many places how hard it is. I hope your wait ends soon.

Speaking of that girl, the next night when I came into work, her comment to me was: (sarcastically) So, did you have a nice day off? I responded: yes, I alway's have fun when I am at home in pain and can't move. And then I just walked away.

I thought that I was getting better today, pain still there but not as intense, was able to clean my bedroom. Sat down on the couch and fell alsleep. But tonight the pain is coming back.

When he put me on the MTX he said that the RA was progressing fast. So when he calls me with the results of this Friday's blood work, I will tell him I want to see him to discuss other methods.

I can still work most of the night (I work 4 days, 10 hour shift),  but I do feel that the meds are not helping like they were. On the weekends I don't do much of anything, mostly sleep. I save all of my energy for the 4 days. My son lives with me and he does most of the house work.

I am worried, because I don't want to be in that place like I was last February. And I want my weekends back.

Thank you so much for listening to me, it has helped alot.

Lamba

Posted 3/20/2006 5:33 AM (GMT 0)
I hear ya. Anytime...always around. You're doing the right thing with inquiring about a combo of MTX and a TNF med....I think it will truly benefit you.
Part of dealing with this disease is "getting it all out!" There is not one thing left un-effected both physically and psychosocially when RA hits a person systemically. And what I absolutely hate, is when people cannot achieve remission. Some are lucky and bless them! Others...it's torture. And a strong will, a strong soul, and determination, patience and support are vital when dealing with long term acute phases of RA and all autoimmune disease.
Yeah, I need at least disibility for a while. The minute I can work at least 2 days a week...I won't need it! I don't want to be disabled...but it happenned, and I have no plan B to take care of myself...never thought it would get to this point.
I empathize with the weekend thing. In nursing school...if I wasn't at the hospital I was home in bed with a bok to my face and that's it! Weekends....it was like recharging the battery. But you have to do it. Rest is crucial, so is getting enough nutrients and eliminating as much stress as possible.
Talk to you soon,
Erin
Posted 3/20/2006 11:29 AM (GMT 0)
hi lamba

just read your posts and really feel fot you.Hope you are feeling better. I understand how you feel about work i have done my caring job for over 3 years, the first 3 years i never took a day off sick however bad i felt.Then due to constant flare ups i had 3 weeks off last year and have just had 4 weeks off am going back today but not looking forward to it.I have now handed my notice in and hope to finish soon after struggling for 20 years with desease i have decided to take time out and be nice to my joints.

I have found over the years because you look well and keep a smile on your face people think you are fine,they dont look at your deformed joints when talking to your face do they.

took me years to get disabilty but have now had it for 2 years makes life a bit easier now i can get buses rather than bues and suffering the jorney.

take care

mad smurf (((((((((((((((gentle hugs for you))))))))))))))))

 

Posted 3/20/2006 11:31 AM (GMT 0)
ooops just read my post i meant i could now get taxis not buses,

silly me eyes

mad smurf

Posted 3/20/2006 3:04 PM (GMT 0)

Lamba,

First, welcome to Healing well.  Second, I'm sorry that you're experiencing so much pain right now.  I don't believe that I have RA (neither does my rheumatologist), but I have inflammatory arthritis, as noted by a positive RF and joint pains.  As far as a trip to the ER is concerned, I've only been once.  Last November, my hip and shoulder pain flared big time.  At the time, I was not taking pain medication, just Sulfasalazine.  I felt horrible for four days, called in to work (which is unheard of), didn't sleep, couldn't eat.  Finally, I went to the ER in the middle of the night.  I felt so bad I was just about crying--husband was very worried.  It was the best decision I could have made.  Even though it took forever for them to get to me--it was 4am and not very many staff and I wasn't technically an emergency (I wasn't shot or stabbed or anything), once they did, I received two Toradol injections (great drug), 2 vicodin, and a prescription for prednisone.  I was told to follow-up with my rheumatologist.  The bottom line is you shouldn't have to deal with that much pain.  If you can't sleep and can't eat, I would recommend a trip to the ER.  Even though, it's not a pleasant place to be, you'll probably be glad that you went in the long run.  Ever since that trip to the ER, my rheumatologist has made sure that I have access to a pain killer.  I'm currently taking ultracet with no problems.

I hope you feel better soon.

Elcamino

Posted 3/20/2006 4:34 PM (GMT 0)

Hi

Well I had a restless night last night. I kept waking up because of the pain, and woke up a 8:00 this morning. I wear perscription glasses for reading, and tried to read before going to sleep. The words were blurry. Is this related? Also my knee has a burning sensation it. Also when I would wake up, the back of my neck was all wet. I did take a Hydrocodone before going to bed. Hopefully my Rheumy will call today.

I have a new supervisor and when he found out that I have RA, you know what he said to me? Your to young to have that. Boy, did I set him staight. In case your wondering I just turned 51 this February.

I don't have any sick time left, and not much vacation because of this stupid disease. There have been alot of layoffs where I work and so far I havn't had to take any work without pay. If you start having to without it being approved, you are the first ones to go.

Well I guess that I will go back to bed and see if I can get any more sleep. Thanks again for listening.

Lamba

Posted 3/20/2006 7:45 PM (GMT 0)
geesh...if he brings up age, let em' know about people who have had RA since they were 11 years old!
gee?...am i too young as well? i'de like to call and ask him that. in fact...he should come over my house & get a glimpse of reality. that's thinking for ya right? hmmmmm?...he sounds like he works for SSI and disibility..."Oh you're young and educated, blah blah blah....." so i suppose young people don't get cancer either huh? what a jerk.
stupid a**. LOL.
******* yeah, that ticked me off! can ya tell? ***********
Posted 3/20/2006 9:09 PM (GMT 0)
Believe me, I set him straight right away. I gave him some facts. Some people talk before they think. I can usually ignore them because they are just ignorant, but I couldn't let that one go.
Lamba
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